Tuesday, March 30, 2010

It has come to the attention of many bloggers that a mother by the alias of Smockity Frocks has posted a blog entry whereas she mocks what appears to be an autistic girl, claiming that the girl is rude, impatient, and making mocking jokes about the girl's flapping. She has since removed the post for this, however, a copy of it remains on Google's cache.

I know that a couple of other bloggers have picked up on this story, and once again, Lizditz is compiling an excellent list of responses, from Storkdork, Kim Wombles, Terri Mauro, and other autism bloggers. However, I feel that I need to address this as well. As I posted on Kim Wombles' Countering AoA:

Smockity seems fixated on the fact that Grandma did not try to direct the girl's attention to books, backing up her assertion that the girl is being a spoiled brat because of this. She seems unable to understand that the highly-likely autistic girl was fixated on the computers, and would be unable to be distracted and even be upset by the interference.

In the comments for the post, I noticed that people remarked that it's possible that 1) the grandma is not the primary caregiver, and so is only following the guidelines the parents have set out to the best of her ability and 2) that this is a small step in a larger lesson in patience, and that interrupting the practical application of the lesson would hinder the girl's learning.

Personally, I think the girl has the lesson of patience down pat pretty well. Especially for a 4-5 year old.

I'm rather proud of the girl; she maintained appropriate behaviour. I don't care that Smockity thinks that she was being impatient; the girl was being very polite and not complaining about the wait (although, I suspect that her repeated patience comments were her version of "is it my turn yet?" hints).

Instead of making a tantrum, she politely tapped the other child on the shoulder, and did not get upset when refused. She maintained her coping stims, and waited in line. It's better manner than some NTs that I've seen.

Now that I have gotten my personal reaction to this out of the way, I wanted to examine this incident a little more.

April 2nd is World Autism Awareness Day, and despite the involvement of Autism Speaks, the SMART Foundation and the National Autism Association (the last two being supporters of the vaccine-causes-autism myth), I would like to contribute a little and make perhaps a few comments.

I think that Smockity gives us an excellent example of some of the mild challenges that autistic people face today, coming from the problem of ignorance. In Smockity's case, ignorance over autism caused her to be snarky and judgmental towards the grandmother and girl.

This response is a fairly common concern for many parents of autistic people that I have encountered, with an underlining fear that the response may escalate to the point where autistic people, seniors, adults, teens and children, will be excluded from society. Parents share autistic people's fears of a prevalent historical attitude where people with "abnormalities" and particular disabilities are warehoused in institutions and special "schools", where various abuses can occur.

Currently, the disability movements are working towards abolishing the abusive practices used on disabled people, from new laws regarding restraints and seclusion, to getting the public to pay close attention to abusive shock therapy and in impact of being institutionalized on mental health. Looking at past experiences, many of them their own, activists work towards creating a safe place for disabled and autistic people to live and be a part of society.

There is no doubt in my mind that these are huge achievements in disability rights, however, there are also other present day-to-day concerns. For those who fears of institutionalization and abusive treatments are not quite as large a reality, there is the common struggle to interact with a society that still is very ignorant and insensitive to autism and disabled persons, especially people with "invisible" disabilities.

As much progress has been made in the past years to eliminate negative stigma surrounding disabilities and autism, there are those who are still unaware as to what autism and disabilities actually mean. The incident with Smockity is an example, one incident of many where parents encounter an autistic person and have no understanding to the autistic's behaviour and mannerisms. To many parents that I have seen respond, Smockity's reaction reflects their fears of how others are perceiving their children. To many autistics that I have seen express their outrage, her reaction represents the callous treatment they experienced throughout their lives, and continue to face even now.

The negative attitudes and stigma presents real obstacles to autistic and disabled persons and their families, not just a struggle to socially interact. Imagine, if you will, how difficult it is to gain support services if service employees are ignorant of the ways in which autism and various disabilities manifest, the wide diversity of strengths and weaknesses, combined with the various degrees of "functionality", and the unique supports needed for each individual. Imagine social workers who have no concept of disability beyond the strictest definition. Imagine, when convinced of being disabled, of providers who treat you with contempt, scorn, or pity, making you give up your sense of respect in order to get what you need. Imagine, in all the ways Smockity's reaction, contempt and mockery of the little girl and her grandmother in the library could have been avoided.

For some of us, we don't have to imagine: we live it, and struggle ever day to educate our support workers, friends and community not only to understand, but also to put a human face to autism and disabilities. Not only for ourselves, but also for the children, so that they can live happier, more community included lives.

For understanding when we go out into the world, for respect and compassion without pity when we need services, and for acceptance that we can be a part of society and humanity.

This is why, for the month of April and for every day of every year, I work the best I can with my abilities to increase autism awareness.

Ari is most known for founding the Autistic Self Advocacy Network, a non-profit organization run by and for autistic people to provide support and services to autistic individuals while working to change public views of autism through community education. Embracing the principles of the cross-disability community, ASAN promotes inclusive education, community living, and the inclusion of autistic individuals in the national conversations and decision making that concerns autistic people. Currently, ASAN has chapters in several states in the US, as well as in Australia and Canada, and is engaged in initiatives on both state and federal levels.

While Ari certainly does not work alone as founding President of ASAN, he also has his own personal contributions and outstanding achievements. He has served on the New Jersey Special Education Review Commission, was appointed by Governor Jon Corzine to serve as Vice Chair of the New Jersey Adults with Autism Task Force, was the Policy Workgroup Leader for the Youth Advisory Council to the National Council on Disability, is a board member of TASH and the Autism National Committee, and has served as the first Patricia Morrissey Disability Policy Fellow at the Institute for Educational Leadership. During his time serving on the New Jersey Special Education Review Commission, he wrote a minority report on aversives, restraint and seclusion.

He has been recognized for his work, having received the HSC Foundation "Advocates in Disability" Award and the United Cerebral Palsy's "Expanding Horizons" Award.

Recently, Ari has been involved in the passing of the Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247) and on the investigation of the abusive practices of the Judge Rotenberg Center. He has expressed personal interest in the case of Zakh Price, and has been involved with the protests and cross-disability outcry of Autism Speaks derogatory portrayal of autistic people.

On top of it all, Ari is a senior student of Political Science at the University of Maryland, Baltimore County, where he is finishing up his studies for May 2010.

In comparison to the other nominees that were confirmed, Ari's involvement in the autistic and cross-disability fields, plus his own experiences in a secluded special needs education program and post-secondary education makes him an excellent addition to the National Council on Disability. His own achievements and mission statements are very similar to the goals of the NCD, "to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, and that empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society."(NCD)

I am sure that I am not alone in the autistic and cross-disability community when I say that I am confident that the US Senate will not hesitate to maintain the purpose of the National Council on Disability, will not create barriers for all persons to have an active role in society and the government, and will participate in empowering autistic and disabled persons in being included in national discourse.

Thursday, March 4, 2010

This was written by myself and Amy Caraballo for the Autism Women's Network. It is available on the AWN site here .

The Proposed DSM-V Changes: Is it a Step in the Right Direction?

Lately, the online communities have been talking about the recently released proposed revisions for the the Diagnostic and Statistical Manual of Mental Disorders, version 5 (DSM-V). The proposed revisions embody quite a few differences in the diagnostic criteria for disorders previously under the umbrella of Pervasive Development Disorder (PDD). Available onlinefor comment, the two main concerns appear to be vague wording of the diagnostic criteria and whether or not Asperger Syndrome should remain as a separate diagnosis.

Diagnostic CriteriaUnder the DSM-IV, each subcategory of the PDD spectrum was fairly specific in listing criteria for the diagnoses. However, despite that, many children who did not fit the subcategories of Autistic Disorder, Asperger's Disorder or Childhood Disintegrative Disorder were given the diagnosis of Pervasive Development Disorder - not otherwise specified (PDD-NOS). PDD-NOS has included many presentations of the disorder. Over time, the number of children receiving PDD-NOS has been increasing. It is not surprising that the DSM committee felt that something was amiss. "Not otherwise specified" is far from informative.

The proposed changes to the DSM-V include merging Autistic Disorder, Asperger Syndrome, Pervasive Development Disorder - not otherwise specified (PDD-NOS) and Childhood Disintegrative Disorder into the classification Autism Spectrum Disorder. Rett’s Disorder has been removed from the DSM and labeled a "medical disorder". While there are various opinions on the matter, many are extremely concerned over the vague diagnostic criteria in the proposed manual.

1. Clinically significant, persistent deficits in social communication and interactions, as manifest by all of the following:

a. Marked deficits in nonverbal and verbal communication used for social interaction:

Much of the concern is over criteria one (see above), as many of the deficits cannot be measured in a clinical setting. As most clinicians would be unable to observe children in their natural environments, much of the information used to determinediagnosis would consist of speculation and interpretation by unqualified persons such as teachers and others who work with the child. This makes the diagnosis subjective and dependent on the knowledge of individual observers.

Section 1.a assumes that the average pediatrician has adequate speech and language training in order to determine deficits in a verbal child. While the non verbal children may be easy to identify under criteria a, those without obvious speech deficits may fall through the cracks without proper evaluations by speech and language pathologists.

Other concerns relate to the age in which some of the criteria is appropriate. For instance, section 1.b requires a lack of social reciprocity. Reciprocal social behavior refers to the extent to which a child engages in emotionally appropriate turn-taking social interaction with others. It is normal for very young children to engage in parallel play and thus typical children do not always engage in reciprocal play. Section 1.c indicates that the child must show deficits in peer relationships - something that is not always obvious in early childhood.

The manifestation of these difficulties may not be cut and dry. Often, like-minded children flock together. With the rate of Autism diagnoses rising some Autistic children may have developed peer relationships with others on the spectrum. Additionally, renowned specialist, Tony Attwood has found that girls have naturally higher verbal and social skills than boys which can often lead to missing the diagnosis under the old criteria1. Under the proposed criteria, these children would simply not qualify for diagnosis at all.

Since all three criteria are required to receive a diagnosis, it is easy to speculate that many children will not be diagnosed until well past early intervention years when or if they would show obvious deficits.

2. Restricted, repetitive patterns of behavior, interests, and activities, as manifested by at least TWO of the following:

b. Excessive adherence to routines and ritualized patterns of behavior

c. Restricted, fixated interests

The wording for criteria two (see above) is not only very vague, but insinuates that these behaviors are undesirable. This is directly in conflict with the current mentality of concentrating on strengths as well as weaknesses. The proposed changes return us tonegative stereotypes that define autism as a series of defects. Compounded by vague wording, criteria 2 fails to define what defines "stereotype", "unusual", "excessive" and "fixated". This lack of clarification allows those using the DSM-V for diagnosis, to rely on their own interpretation and definitions. As with criteria one, the diagnosis becomes subjective with what the diagnostician perceives as being usual, excessive and essentially typical behavior. Instead of clarifying, this criteria not only confounds the diagnosis, but is also contrary to defining autism as a widely diverse spectrum that has particular deficits as well as unique abilities.

3. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

Criteria three (above) appears to confirm the fear that young spectrum children will go undiagnosed. Data has shown that early intervention is key to helping Autistic children with potential deficits. Additionally, failure to identify children at an early age could cause severe stress to children who need accommodations to function in mainstream society. It has been confirmed that the earlier accommodations and interventions are put in place, the better the outcome for the Autistic person. However, under the new DSM-V criteria, it is likely that children will go undiagnosed until they are school age and beyond. Children who previously may have been diagnosed Asperger's Disorder and PDD-NOS could easily slip through the diagnostic cracks.

Finally, a large concern is by some in the Asperger's adult population who were previously diagnosed under the DSM-IV. While many of these individuals continue to fit the Asperger's Disorder under DSM-IV, there is concern that as adults, they will be "undiagnosed" under the DSM-V since they now do not present with the new criteria requirements. This presents a very real question; how will the currently diagnosed population fair through this change?

Autism vs. Asperger'sFor various reasons, some feel that Asperger's should remain separate. Some speak of pride of being "Aspies" (a term created by the adult population), finding a sense of superiority and self-esteem in the distinction. Along with this view, there are those that feel that Asperger's includes a difference in communication skills and ability to adapt than that of Autistic Disorder. The mindset is that these differences mean that those with Asperger's are not the same as others on the Autism spectrum. The hard working advocates who have toiled endlessly to have Asperger's recognized as a valid diagnosis, see this as a step backwards from what they have worked for, and perhaps, are feeling that they have struggled for nothing.Inclusion IssuesUnder the new DSM-V, there is also a concern that people currently diagnosed as Asperger's will be automatically slotted into specialized Autistic community, and special education programs where they will be segregated from their non-disabled peers. This is a tribute to the prevailing mindset that those with the Autistic Disorder diagnosis are somehow "more disabled" than those with Asperger's. Additionally, this mindset is testimony to the current problems inhibiting proper inclusive programs in our public schools and communities. It appears that society is still more inclined to let labels define the supports and accommodations rather than individual needs.

Currently, the only diagnostic difference between Autistic Disorder and Asperger's has been defined by verbal skills and more specifically, a child's ability to speak. Using this model a person diagnosed with Asperger's is no less Autistic than a person diagnosed with Autistic Disorder. However, under the Individuals with Disabilities Educational Act (IDEA) qualifying diagnostic criteria, this distinction has often excluded Asperger's as an Autistic Disorder. For some, this has prevented access to accommodations, support programs and services that they need to remain stable or reach their full level of independence, both in schools and in the community.

Currently, U.S. states have used Autism, Emotional Disturbance and Other Health Impairment as the qualifying diagnoses for those with Asperger's Syndrome, but not actually Asperger's. Additionally, IDEA has a behavioral qualification which states that a child who has "behavior that impedes his/her learning or the learning of others" also qualifies for IDEA protections. IDEA is supposed to be "needs" based and not strictly applicable to diagnostic labels. It speaks more about the state of accommodations and specially designed instruction than the actual definition of Autism.

One solution to the problem of accommodations is the changing IDEA and other educational criteria by removing static qualifying labels (such as Autism, Emotional Disturbance, etc). Because IDEA does not use the DSM, it is unclear how the proposed DSM-V changes will affect a students ability to receive special education services.Severity LevelsOne unknown is what the severity levels of Autism Spectrum Disorder will look like in the DSM-V. Previously it was thought that Asperger's Disorder was the "highest functioning" Autism, Pervasive Developmental Disorder Not Otherwise Specified was next and finally Autism being the "lowest functioning" diagnosis. However, over time, it has become more apparent that the lines between these diagnoses are not so clear. While those with Autism may have lower IQ scores, it is not obvious how accurate these scores are, as those with the current Autistic Disorder almost always have severe verbal communication impairment.

It is thought by some that breaking down the new Autism Spectrum Disorder by severity may be a step in the wrong direction. Until there are standardized tools to accurately measure a persons ability to "function", severity is subject to speculation and interpretation. However, as there are no proposals published currently, it is too early to say what these severity levels will look like or whether they will exist at all.

Looking toward the futureWhile there is much scrutiny over what the DSM-V should look like, it is questionable as to why the Autism Spectrum diagnosis is remaining in the DSM at all. While there are many theories about the origins, it has been established that Autism is not a temporary mental health issue, but a life long neurological and biological issue.

Autism has been defined as a spectrum disorder which indicates there are many varied presentations. One could speculate that Autism, itself, is not the disorder and that other commonly co-morbid medical diagnoses are responsible for any impairment.

Many Autistics also have speech and language disorders, sensory processing disorders, fine and gross motor disorders, immune system dis-regulation, and learning disorders. These disorders do not appear in the DSM, but appear in the ICD (International Classification of Diseases) manual which is medical, in nature.

Would it be more appropriate perhaps to place Autism Spectrum Disorder in the ICD manual with the commonly co-morbid diagnoses? This would ensure that every person diagnosed with an Autism Spectrum Disorder is given appropriate interventions and support customized to individual needs. Attempting to find a "one size fits all" diagnosis seems unrealistic when not every presentation is the same. Indeed, doing so would likely alleviate concerns for covering all the diagnostic criteria in the DSM-V. While many Autistics prefer not to be considered diseased, changing the diagnostic process to the ICD manual is preferable because of the many co-morbid issues.

As it stands now, will these proposed revisions to the mental health diagnostic criteria cause more Autistics to fall through the cracks, as opposed to being recognized, and given the appropriate supports as soon as possible. Does the vague criteria reinforce the standard, narrow diagnosis of Autism, instead of reaching out to acknowledge the wide spectrum of Autism?

1. The Complete Guide to Asperger's Syndrome, Attwood

(Disclosure: Corina Becker serves on the board of the Autism Women's Network)